Annabel turned One

Annabel turned One which means it's been over a year since I've tracked our daily lives of raising our two little girls with Albinism. It's time I recount our year with all its triumphs and tragedies.

We survived another summer without sunburns, or heat stroke which in and of itself is no small feat when you have a wild 2/3 year old who lives to be outside and often doesn't want to wear her hat. We spent weekends at the indoor pool while everyone else we knew was at the beach, days at the indoor playground instead of the splash park, and evenings at the outdoor slides when the sun slowly started to drift down enough that a pulled off hat or shoulder peaking out didn't send me and my husband into sunburn hysteria. Maybe we worry too much maybe we don't. Annabel was most often covered up in her stroller and she was most content out of bright lights.

Summer is upon us again and right now our biggest struggle is getting Annie to wear shoes and walk outside. She is terrified of being outside unless she's held, so we are trying to figure that all out right now, but I feel confident she won't start school barefoot, so I am trying not to overthink it.

Our ophthalmologist referred us to CNIB (Canadian National Institute of the Blind) and we began  vision therapy with the girls. Our vision therapist, Sandy, drives over two hours to be here for an hour with the girls doing different hand-eye coordinated activities. When I hear the words Vision Therapist I automatically imagine someone serious, but when you meet Sandy she has one of those souls you feel like you've known forever and my anxious two year old, who is notoriously not a people person, sat and played with her like they'd been best friends their entire lives. Now that I am back to work full time it's harder to make these sessions work, but Sandy is so great and we will make it happen as often as we can.

We tried again and again to get support from FSCD and have been denied again. We know other families with children with Albinism, who do get support from them, but after many battles with them we've decided it isn't worth the stress, so we've let it go. If you feel like you have the energy to take them on they offer so much great support to children with disabilities IF you can get approved.

Annabel started walking much later than Scotlyn taking her first steps at around 15 months old and still isn't talking. The interesting thing about this is that her vision is a lot better than Scotlyns and Scottie walked by 10 months and had so many words at the age Annie is now. I think so much of it depends on the kid and we tend to want to blame the vision.

What I can tell you is that we have fully adjusted to raising children with Albinism, every year it gets easier, and every moment is so worth it.

Annabel Leigh

On November 21, 2016 we welcomed our second baby girl Annabel Leigh, nine days early 7.4lbs 20 inches long, into our family. She is an absolute dream of a newborn who nurses, sleeps, and is so patient, as we care for her older sister Scotlyn. There were many times during my pregnancy when I wondered if Annabel, like Scotlyn, would have Albinism. I tried to tell myself that I didn't care and it didn't matter. Well, it doesn't matter, but there were a few moments during my caesarean when my husband could see our sweet girl, and I still could not, that I anxiously needed to know what she looked like, did she have that tell tale snow white hair. At first, covered in birth, my husband thought her hair had a darker sandy appearance and there was a moment of what felt like relief. It would mean no eye surgeries, no dashing to the car to get out of the sun, worrying the bright lights were hurting her eyes, or diligently applying SPF 100 multiple times a day throughout the year. It would mean no questions about nystagmus, no strabismus, or other vision concerns, no social implications. Then there was the moment and any parent knows the one I mean. The first time you lay your eyes on the baby you grew for 9 months and it is the true definition of love at first sight. Her hair wasn't just white it quite literally looked like it had sparkles. Her eyes, a dark blue, were kept mostly closed sleeping like she just floated down from heaven into my arms. I knew then that she did have Albinism and it wasn't just okay; it was perfect. She was exactly the baby that we were meant to have brought into our lives so beautiful and sound that it created a fear in my heart that she was too perfect for this world.

After losing my older sister in 2008, I dreamed of the day I would have two little girls, close in age as we were, to watch grow together. Scotlyn adores Annabel and even when she refuses to give Kyle, or I kisses she always has a kiss for Anna. She insists on kissing her every night before bed and at times kisses her so feverishly I wonder if our little Bell can even breathe. I always catch myself saying, "I can't wait until.." they can play, and run, and laugh, but I am making a conscious effort to try and slow down and take in these precious newborn moments with our girls before we have any of the real stresses to deal with that I am sure all parents cope with, not just parents of kids with "disabilities". I already know Scotlyn will succeed at whatever she sets her mind to. At not even two, I know her low vision will not stop her and she amazes us with her intelligence every day. My hope now is that Annabel will also amaze me with the things she learns and sees and I am sure she will.

Annabel is now just over two months old she's already rolling from back to tummy and weighs 12.7lbs and is 22.5 inches long. She's growing so fast & continues to amaze us with her sweet gentle spirit.